A total of 19 interviews were conducted (n = 5 clients, 14 staff). Of the five clients interviewed, two identified as male, two as female, and one unreported. Most identified as White (4) and one person as Hispanic. Two clients were experiencing homelessness and almost all had used intravenous drugs (4). Those who injected drugs reported sharing needles never (2), rarely (1), and half the time (1). The number of sexual partners in the past year ranged from 1–3. All clients knew their current partner’s HIV status and reported low condom use (3 never used condoms and 2 rarely used them).
Of the 14 staff interviewed, five were directors or managers of Testing and Outreach units in their organization, while the remaining 10 conducted HIV and/or sexually transmitted infection (STI) testing. Most of the people who performed HIV testing also provided or coordinated counseling and outreach services, and two identified as a Peer Recovery Specialist or CHW.
The staff interviewed represented 10 organizations in Indiana that provide HIV testing services. Most organizations also provided education and outreach on HIV and STIs, ranging from positing flyers in public spaces to actively going out to the community with testing kits, as well as healthcare navigation, and medical and non-medical case management (e.g. housing assistance). About half of the organizations also had their own HIV treatment and PrEP services. Some organizations were part of larger networks and partnerships, serving up to 45 counties and partnering with up to 75 other HIV/AIDS organizations. While few organizations were specifically focused on PWID and had a syringe service or harm reduction program, all organizations had experiencing working with high-risk populations and many targeted specific efforts to further reach populations in their area at high-risk for HIV or who have low utilization of HIV testing services.
Experiences and Barriers to HIV Testing
Figure 1 visually summarizes the HIV testing experience as described by interviewees. Clients come to organizations to get tested for a variety of reasons. From the organization perspective, a client may come once because of a known or suspected exposure whereas others come in regularly, anywhere from every 3 months to yearly, likely because of risky behaviors. Clients shared that choosing to get tested depended on their individual risk assessment such as drug use and sexual activity. Those who viewed their risk as high (e.g., due to injection drugs) tended to test more regularly and frequently. Clients reported accessing testing at treatment and recovery centers (e.g., needle exchange programs), HIV testing organizations, and/or doctor’s offices and were last tested anywhere from 1–3 months prior to their interview, either by a rapid test or lab-based blood test. All staff reported using rapid HIV testing as the initial test for clients. INSTI® HIV-1/HIV-2 Antibody Test by bioLytical Laboratories Inc. [23] and Determine™ HIV-1/2 Ag/Ab by Abbott [24] were specifically mentioned as initial rapid tests that detect HIV from a finger prick of blood and yield results in one-minute and 20 minutes, respectively. OraSure, another rapid antibody test that detects HIV from oral fluid and yields results in 20 minutes, is used by staff as a second rapid test to confirm only positive INSTI results. Clients who test positive using a rapid test would then take a lab-based test that can take up to a week for results. The positive lab result officially confirms the HIV case so that the organization can report it to the Indiana State Health Department, per state law.
Many staff connect clients who test positive with a case manager to link directly to care within their organization, often starting them on treatment that day. Those who do not have treatment services within their organization, have strong partnerships with other organizations that they refer clients to. Many also noted that providing education before, during, and after testing is considered crucial for both positive and negative tests.
While most clients interviewed found HIV testing to be easy to access, staff mentioned key access barriers including many people not knowing where or how to access testing, concerns about cost, and transportation, specifically for high-risk populations such as PWID, people experiencing homelessness, or people who are incarcerated.
Stigma was viewed as one of the most significant barriers to testing, for clients, in terms of drug use, fear of results, and worrying about other people seeing results. From the staff perspective, stigma as a testing barrier is related to societal attitudes and beliefs about drug use and sex, and something that they hear from clients and are actively trying to improve through education and counseling, “I think stigma is a huge reason, obviously, that people stay away from getting tested. They don't want to feel dirty. They don't want to be judged for their sexual activities” (James, HIV and STI Tester). Stigma can also be associated with lack of knowledge about HIV and resulting misconceptions about HIV risk, “Everybody still thinks this is mainly men versus men” (Ana, Medical Assistant), or creating fear of getting tested because others might find out they're afraid, you know, like, in a small town, that somebody might find out that they're being tested or what if they are positive, then what are they going to do? People are just afraid, a lot of times to find out (Bonnie, HIV Tester/Counselor).
Acceptability of AHI rapid test
Acceptability of the described AHI rapid test was high. All participants who were asked if there was a need to detect HIV earlier in high-risk populations said yes. All clients and all but one staff who were asked if having a test that “detects HIV a month earlier than other tests but takes longer to receive results (around an hour instead of 15 minutes)” is a worth-while trade-off, agreed,
“An hour’s not too bad. It would be torture, it would be an hour of torture, but yeah, that’s pretty good… that’s impressive. It’s worth it, worth the hour of torture [laughs] … to have that opportunity” (Terrence, client)
“I think it would be beneficial to the clients because when you tell them that they have to wait 90 days to find out from a risk that happened today. [Even] If that got jumped up to 60 days versus 90 days that's going to help that person.” (Carissa, HIV and STI Tester)
The potential for this test to reduce and prevent HIV treatment and facilitate early treatment for those who test positive, outweighed the few concerns, expressed by just two participants (both staff), Table 2.
Table 2
Benefits and Concerns of the AHI rapid test
Benefits |
Reduce/prevent HIV transmission | “… these two or three month periods of time that it takes to find out [if you have HIV]. That's a lot of life going on in that period of time. And if you want to try to let all the people know that you might have come in contact within those two to three months. That's not easy… I think it's [the AHI test] a great idea. For all kinds of reasons, not just that there's less time to be infecting other people, there's an easier chance of finding the one that infected you. You know, there's a lot of good stuff going on there if the time period is shortened down.” – Terrence, client |
Facilitate early treatment, particularly for high-risk clients who are sometimes lost to follow-up | “…if they tell me it's been three or four weeks ago, since they had the unprotected sex... my biggest worry is: are they really going to come back in 90 days? .... So, yeah, I think that [AHI test] would be great. Even if it took a little bit longer, and I had to hold them here in the clinic a little bit longer, if it tested sooner, that's great, because you're not always going to capture people to come back within 30 to 90 days.” – Ana, Medical Assistant |
Anxiety-reducing for some | “if it's someone who's testing because of the specific experience, especially if it was non-consensual or something like that, they've already had to wait so long when why wait longer than necessary” – James, HIV and STI Tester |
Limitations or Concerns* |
Clients may be used to faster results | “Um it's hard though, because with the rapid tests we have now, that's one of our gimmicks, you know, it's like ‘it only takes a minute’, but I think as long as you work things in a way that make sense for your organization, then it's it can definitely be worth it.” – James, HIV and STI Tester |
Organizational feasibility to accommodate wait time | “It just, it depends. Like for our setting, there are a group of people who test and how we test, we try to, you know, see everyone within 30 to 45 minutes. So then, you know, our way will probably not be the best option for our site, but it may be the best option for someone else.” – Morgan, a Testing and Counseling Program Manager |
*only reported by staff | |
Target End-users
Possible end-users discussed for this test were: 1) client (i.e., self-testing), and 2) testing by a CHW or peer recovery specialist (i.e., CHW/peer-based testing). Table 3 outlines the benefits and limitations of each end-user as perceived by participants.
Overall, there was a greater preference for CHW/peer-based testing over self-testing, however clients were more comfortable and open to self-testing than staff. Despite staff hesitancy, most recognized that self-testing has “its place” and could serve as “a good tool for people to have”, or at the very least can be a last resort to reaching others who wouldn’t otherwise get tested, “I think it could be dangerous, but I also see it as a way that maybe someone would have never received that test and they never would have got the nerve…so it's definitely a tool. And I would love to have that tool to give somebody if they weren't comfortable in testing with me or testing at our center…” (Blaire, Director of Outreach and Testing)
Participants suggested that conducting the HIV rapid test could be done by anyone who is adequately trained, including on follow-up and linkage to care, “I think it's a good idea for somebody who's trained to do the test and training doesn't necessarily mean they have to be a doctor or a nurse. It just means that they should be somebody who's prepared to give the results, whatever the results may be…and who knows like if it were to turn out positive, then you would want somebody who knows how to get connected to care and all of that, but I couldn't care less whether it's a doctor or not. Just someone who knows what they're doing” (Terrence, client). These skills are some of the benefits mentioned for CHW/peer-based testing in Table 3.
Additionally, organizations preferred CHW/peer-based testing, especially for high-risk or hard-to-reach communities like PWID,
“I definitely think either peer-led or community health testing like we do, I think would definitely benefit [PWID] … I mean for us, we're able to test quite a few injection drug users just because again we're going to where they're at, and we have an education component with that… nobody wants to be tested in the beginning, but then as the educator is halfway through the education, 6 of the 10 now want to be tested. So I think that component is very important because again people think that ‘this can't happen to me’ or ‘I just don't want to know’.” (Kennedy, Director of Outreach Services)
Table 3
Benefits and Concerns of End-User Type
Self-testing | Benefits |
Increases access/ addresses barriers | “I think self-testing, it's got its place. I think if they're not going to come in here, because of the stigma, it's great.” – Ana, Medical Assistant “I think especially with a lot of people who use IV drugs, it's kind of an isolating lifestyle. And I think it becomes a barrier to healthcare, having to… seek out resources for something… that there's a giant social stigma for, and also, like, sometimes it's just hard to find those programs. Being able to do it at home would eliminate pretty much all obstacles.” – Kiana, client |
Convenience | “I could do it… on my own schedule as opposed to going to a clinic” (Robert, client) |
Privacy* | “I think it'd be cool to be able to do it yourself, because a lot of times, I feel like some people might have that like sliver of doubt, to where, you know, they- if something did happen, maybe they would just want to be able to test themselves in private.” – Robert, client |
Peace of mind* | “I can be by myself and if I imagine any wonders or issues or whatever, then it's just easy just do it and, you know, go on from there. Like I said, at least I know that I'm good on my end of it” – Natalie, client |
Limitations or Concerns |
Accuracy* | “… like with pregnancy tests or with any other thing like that, there's always that doubt of, well, you know, maybe it's maybe it's wrong, maybe I'm gonna have to go to a doctor to check and stuff” – Robert, client |
User ability to perform test correctly | “… not everyone is great at like following directions… you might get an unclear result if you're not following directions clearly” – Kiana, client |
User ability to interpret results** | “I just think that having somebody do a home test, they're just not going to understand. You know, all they're going to see is that that line, or those two lines, and they're going to think they're positive, and then being able to reach somebody. I mean if somebody tests on a Friday night at home, they would not be able to reach say our organizations until the following Monday because we're not open on the weekend – Kennedy, Director of Outreach Services |
Self-reporting** | However, my concern is the self-reporting. If I'm self-testing, you’re home alone, you know, am I going to report myself if it does come out reactive? – Morgan, Testing and Counseling Program Manager |
Lack of pathway to follow-up treatment | I guess the biggest downside would be concerned about what action to take, willingness to take action?” – Jaime, client “… self testing is great but would they really let somebody know if they were positive, to be able to get into medical management, you know, treatment in that way. And you have to remember like we work a lot with people who use drugs, who inject. So, some of them might not be very forthcoming with that or just might not ever do anything about it. Sometimes it takes that extra push from us. You know it's not a death sentence anymore, you can get better, we can do treatment, you know some of that encouragement. I don't know that we would ever get them into care, that's my biggest concern around here.” – Kayla, HIV Prevention Outreach Coordinator / Certified Peer Recovery Coach |
Lack of emotional support and counseling | “If a person turned out positive, they're kind of all on their own at that moment. And that would be a traumatic moment… You don't test yourself for cancer and find out all alone that you have cancer. So that would be dramatic.” – Terrence, client “I think my main concern about that [self-testing] is especially with HIV and just because of those stigmas we talked about earlier, the counseling part after a positive test… there’s that support in an office of people [who] are educated in one, crisis intervention, and two, in HIV. I think is very important and if you test at home, you don't have that component of it.” – Gia, Harm Reduction Program Manager |
Potentially exacerbating stigma | “But I think with advancing the move away from stigma and historical trauma of HIV from you know the 80s and the 90s, and the silencing and some of the public service campaigns that maybe dramatize HIV in not so helpful ways, I think that as we push to really get stigma dealt with, it's not necessarily helpful to promote the idea that HIV testing is something that a person needs to do at home… it's not quite that, it's really not quite that sensitive.” – Anita, HIV Testing Department Manager |
CHW/Peer-based testing | Benefits |
Addresses access barriers | “You look at some of our counties we serve, they're very very small, and they have no access to any testing whatsoever and if we didn't go there, on a regular basis and do testing at a treatment center or at the county health department… They wouldn't do it… you need to meet people where they're at.” – Kennedy, Director of Outreach Services |
Skilled at building trust and rapport** | “… as a community health worker you could get in there and really begin to understand what their needs are and what their wants are, and you could slowly bring in other people to kind of meet that [need]…to where it's not just them coming to you... I think it can be a great way to combat HIV.” – Blaire, Director of Outreach and Testing |
Can provide education, guidance and support | “I think community health workers are helpful and they can help you understand a wide variety of things having to do with your health… somebody who can make sure that you understand what's happening, right?” – Terrence, client |
Unique bonds through shared life experiences | “… we've had someone that had previous injection drug use and we tested and they were reactive. That same person [tester] was also living with HIV. The instant bond that they had and [how they] were able to communicate about it, their drug of choice that they both used, was an automatic bond… I have years of experience, but the rapport and how quickly they built that rapport with each other… and [to] have a really deep understanding of what the feelings that they were kind of going through even though they were different people, they had those similarities that were, I think it was really beneficial to that person.” – Blaire, Director of Outreach and Testing “it's good when there's someone, like I said, that knows kind of about it [drug use] because I hate people that they get hired at some of these places and then they haven't, they've never lived it, they've never seen it and it's hard to take somebody serious…” – Natalie, client |
Can provide a safe, non-judgmental space** | “It creates a sense of safety. The judgmental piece goes away, the awkwardness… I’m a person who used to inject drugs and so when I can talk about certain things and just like the way they talk about them and not the way, you know, like a medical person or a clinical person would talk about them. There’s, like, almost a sense of just like you can just feel them like loosen up and see them relax” – Gia, Harm Reduction Program Manager |
Limitations or Concerns |
Limitations caused by budget and institutional policies** | “Well, we are limited by our budget and we're limited by what we as an institution can do… we used to go to the jails, and then they changed the rules... so now we can't” – Andy, Outreach Coordinator and Tester, Community Health Worker |
CHW/Peer capacity** | “Our limitations are also based off of like you know what the worker is capable of doing with their time, like right now in our office there's two of us. … I would say like rural communities are extremely difficult, because, like, we had a few sites that are like, an hour away. And that's the general like limit that we can do because mileage, and how far we're willing to drive on our time” – Andy, Outreach Coordinator and Tester, Community Health Worker |
Gaining community trust is hard work** | “I think sometimes it's seen as not as effective only simply because the people aren't putting in the work to do it. They're not putting in the work to understand the culture that they're going into, and they become, they get rejected very quickly, and they just don't put the effort in or they don't have an understanding, or they communicate that no one's at that venue. They just haven't done the hard work” – Blaire, Director of Outreach and Testing |
CHW/Peer safety and emotional wellbeing** | “We also see occasionally somebody come through who hasn't really dealt with their own baggage, so to speak… I've seen I think a lot of projection, I think a lot of countertransference, I've seen a lot of re-traumatization happen in people, if they haven't done that work. So yeah, absolutely peer based testing, hell yeah, but whoever's managing that needs to be conscientious of the ways that that person that that staff member, that peer-based tester, can also get re-hurt, you know, or continually harmed in that process.” – Anita, HIV Testing Department Manager |
*only expressed by clients **only expressed by staff |
Implementation Considerations
Given the benefits and concerns for self-testing and CHW/peer-based testing, key considerations for implementing an AHI test were identified in Table 4.
Table 4
Implementation Considerations for Each End-User Type
Self-testing | CHW/peer testing |
1) Ensure accuracy. “As long as I can trust the accuracy and, and, and all that of the test. “Yeah. Because, you know, why not get tested [laughs]? – Terrence, client 2) Consider the cost to both clients and organizations and how that affects ability and willingness to adopt the test. “There's also just a little frustration with the fact that I mean if you purchase one at CVS that are like $50, and you can come to us and get tested for free.” – Evy, Prevention Team Lead 3) Create a test that is simple to use or “accident foolproof” with simple instructions. “I think as long as the instructions were clear and everything that would, that would be fine to me.” – Kiana, client 4) Include information on what to do if you test positive. “When these type of tests are going to be over the counter… they should also have some information about where people can go to do to do next, if they test positive.” – Jaime, client 5) Find creative ways to achieve a “human element” to self-testing or to minimize loss to follow-up (e.g., online test assistance, education, emotional support/counseling, and/or healthcare navigation). “I would just hope that there was a human element, a way for someone to reach out to somebody that, just to help them deal with the information they received, you know.” – Blaire, Director of Outreach and Testing | 1) Provide training and education opportunities for CHW/peers without testing experience. “if we can train them and get them to read the results accurately, then I’m all for it” – Andy, Outreach Coordinator 2) Hire people with experience and skills that foster communication and trust in communities.“… we have to really befriend the communities that we want to get to know and earn their trust… finding those folks who can help build that relationship is really important.” – Evy, Prevention Team Lead 3) Incorporate the AHI test as an option for clients in addition to existing tests used by the organization. “Maybe [this test] can be something that a patient has a choice of [you tell them] ‘well this could find it [HIV] in two months versus this one finds within three months and the time periods...’” – Carissa, HIV and STI Tester |
Some organizations have implemented a mail-delivered home-based self-testing program during the COVID-19 pandemic for existing rapid tests [25], and offer insights into how they have succeeded at some of these suggestions and how successful the program was been. For Andy, Outreach Coordinator and Tester, that meant well written instructions, “…I’m for that [program]. Mostly because the instructions are written really really well. Because it’s written to I believe a fifth or sixth grade reading level, which is great. I’m all for it because that’s the people who often need it don’t often have a master’s degree or anything like that” (Andy, Outreach Coordinator). Anita, HIV Testing Department Manager, providing an online option is a priority to address some of her concerns for adopting a program like this, “I've been under some pressure to get a testing program going where we're maybe like shipping kits out to people. I'm opposed to that. I think it's a poor use of nonprofit funds to spend $8 - $10 shipping. You know, who one may or may not actually follow up with. So as I move forward with that, what I'll be doing is configuring to have, you know, obviously a screening process before we could send a test to a person, but also setting up like a zoom link with them so that our tester could work on a laptop. And, you know, hopefully at least sometimes have that virtual connection with the person.” Evy, Prevention Team Lead, finds in her experience that while the program hasn’t been as popular as they thought it would have been, clients have wanted that human connection as well, and have chosen to test themselves while connected with staff remotely, “… what we try to do, is do some like risk assessment with the folks, with the person when we’re talking to them before we either send or deliver to the test, and offer to them if they want us to go through the test with them either over the phone or via zoom, that we can do that. And actually, by and large, that people have said yes to that, which we were also a little surprised because we were kind of like, ‘okay, if somebody has this test in their hands, and I mean they’re simple they’re really easy to use’… but people actually have wanted to follow up with us, which is nice”.